What dose of Remicade are you on? Do you think I take too much?

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/8/2007 8:30 AM (GMT -7)   
Ok, I weigh 150 lbs.  I have been getting a higher dose for the past few months, it is 660mgs every 6 weeks.  I am concerned if it is too much and find it hard to believe that I have developed arthritis on such a high dose....


Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007: Increased Remicade dosage to 660mg every 6 weeks, diagnosed with Psoriatic Arthritis and Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica

Post Edited (princesscolon) : 12/8/2007 5:32:14 PM (GMT-7)


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 12/8/2007 11:26 AM (GMT -7)   
Hmmm..I guess I didn't realize that there were different doses.   I don't know what mine is...I guess I better find that out.    Anyways,  in terms of it causing arthritis, I tried to find out if that is one of the potential side effects, and didn't really find anything that says it,  except it does say to contact your doctor if you experience "red, purple, or scaly skin rash, hair loss, joint or muscle pain, mouth sores;".   So maybe?      The thing about Remicade that alarms me a bit, is how it lists the risk of infection.   All the immuno suppressants I'm on list that risk,  but the list on remicade always says "Serious and sometimes fatal infections may occur during treatment with Remicade".    Everywhere I read it lists the "fatal" part, where the other meds don't necessarily say "fatal".    anyways,  just seems weird to me...
~Christie 
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).
Diagnosed with L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
Medications
Remicade infusions ~ Nov. 2007,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone taper 20mg daily, Nexium 40mg twice a day, Lantus insulin 45 units daily, Novolog 10 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, and Calcium daily. 
                 
                                                     
 
 
 
         


RMA
Regular Member


Date Joined Aug 2004
Total Posts : 79
   Posted 12/8/2007 12:39 PM (GMT -7)   
hello

My last infusion i ask about the does if i am getting more or less ...he told it goes by weight ,,he said that if
i lost weight he would give me a higher does ....that is what i was told
REMIDCADE 10-02-07
colazal 750mg 3x3 a day
mercaptopurine 50mg 1 a day
allopurinol 100 mg
rowasa enema pm
multi vitamin
folic acid
fish oil
 
dx 2004 uc
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/8/2007 2:14 PM (GMT -7)   
That doesn't make sense, if you lost weight you would get a lower dose.  I think I am getting 2x my dose weight I think?

Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007: Increased Remicade dosage to 660mg every 6 weeks, diagnosed with Psoriatic Arthritis and Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/8/2007 3:02 PM (GMT -7)   

"The recommended treatment is an infusion of 5 mg/kg. You will get additional doses at 2 and 6 weeks after your first infusion and then every 8 weeks after that. In some cases your doctor may decide to increase your dose up to 10 mg/kg"  Okay, so I guess if I am 69kgs the normal dose would be about 350mgs.


Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007: Increased Remicade dosage to 660mg every 6 weeks, diagnosed with Psoriatic Arthritis and Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 12/8/2007 3:39 PM (GMT -7)   
i was on 500mg every 8 weeks and I had  to stop because i developed drug induced lupus.  I have severe joint pains in my ankles, knees, wrists and fingers.  I was also extremley fatigued.  Did you starton a low dose and increse it because it wasnt working? goodluck, but i would talk to your doctor about dosage.  I was sicker on the remicade than off
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Lexapro (10mg)
-Prednisone (40mg when flaring)
-Multivitamin, Aloe Vera Gel


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/8/2007 4:16 PM (GMT -7)   
Poohbear, I am concerned now.  I had the worst joint pain the past few weeks, I have never had joint pain in my life but my wrists, ankles, and knees have been killing me.  I am also having mouth sores and some dry skin.

Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007: Increased Remicade dosage to 660mg every 6 weeks, diagnosed with Psoriatic Arthritis and Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/8/2007 4:32 PM (GMT -7)   
The standard starting dose for Remicade is 5 mg. per kg. (2.2 pounds) of your body weight, given every 8 weeks after a three-dose induction. So if you weigh 150 pounds (about 68 kg.) the dose would be about 340 mg.

For people who don't respond, the dosage may be increased to 10 mg. per kg. or the medication may be given more frequently. Some GI's may use a different schedule or dosage based on their experience. But your dosage is within the recommended range, and if it's working I wouldn't worry about the dosage.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 


3crohnysisters
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/7/2008 6:51 PM (GMT -7)   

HEY!

I weigh 90 pounds and am on 900mg every six weeks.

you are on a pretty high dosage also.  You should ask your doctor to talk to contact local blood test centers near you and get blood tests four months after an infusion.  I don't remember what it is called, but it will see if your body is keeping the remicade in your body or not.  I just took the test and if I don't have enough remicade in my body, I will be taken off and probably start humers.  I am scared too.  Hang in there.

I started remicade the summer of '05.  My mom put it off for a while until humera came out because you can't get back on remicade after having a reaction.  But it has made the biggest difference in the world!  My mom says it was like night and day.  If you live anywhere near Cedars-Sinai Medical Center in L.A....GO THERE! they are amazing!  The pediatric nurses...not so much.  But if you go to the infusion center...the nurses are great!  Especially Magda!  Also, never be afraid to ask for the main nurse...any time aany where.  If you are lucky enough to go to the infusion or pediatric center at Cedars-Sinai or if you are in the hospital over there ask for Shane!  He is great and he explains what he is doing every step of the way.

A couple of tips:

  1. as much as it hurts, have them tie the band around bare skin, not your shirt
  2. drink plenty of water to get your veins nice and plump
  3. do not squeeze your own hand, a ball, ace bandage roll or anything where the consistancy of pressure veries.  They best thing to squeeze when they are putting the needle in is a roll of medical paper tape.  It is nice and firm
  4. if you notice your nurse is not feeling for a vein, but rather looking, ask for a nurse that uses the feeling method.  They will not look, just feel.  This way they can tell if it is a tendon, bad vein, or good vein.  A good vein should be bouncy and should almost feel like leather.
  5. sometimes it also helps if you ask them to count to 3
  6. if you ask them to count, take a deep breath on 3 or if they don't count, take a deep breath when you feel it go in.
  7. if you find you are allergic STOP USING IT, but there is clear, rectangular tape that you pull on the edges to take off.  PAIN FREE!  It is amazing.
  8. some people have a nice plump vein down the crease of their arm, leave it as a last resort, it is the most painful and risky place.  A lot of nurses mistake your tendon for a vein even when they use the best method (the feeling method).  Also, as blue as the vein may look, it is very thin, to get the needle in the vein they will have to aim it at a 90 degree angle.  There may be a vein on the top of your arm, that is a GREAT vein if you have it because there is a better chance of getting it in the vein then in the tendon beneath it-it is a 40 degree vein
  9. Heating packs are your friend!  It sometimes helps to put them over the place the infusion tube is

I hope I didn't overload you, but this is what I do, and it works every time!

Remember, never feel needy if you  ask for a different nurse, you shouldn't stay with the same nurse after the third, fourth, fifth prick.

 

 

Post Edited (3crohnysisters) : 1/7/2008 6:57:27 PM (GMT-7)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/7/2008 6:59 PM (GMT -7)   
Princesscolon - I am not on remicade, but I read your post and from your signature, it looks like you haven't been on 6-MP or Imuran??? did you ever think about trying those?

if you are worried about your dosage, could you lower remicade and add 6-MP or Imuran? just a thought.

as for dosing by weight, for what it is worth, my GI says that at least with Imuran, it is as much art as science, that the guidelines are just loose, some people need more/less for their weight and that within a certain tolerance there is a lot of room to adjust the dose. so, that may explain your higher dose.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 1/8/2008 10:34 AM (GMT -7)   
I'm on 500mgs every 7 weeks & I weigh about 110lbs. currently. When I first went on a high dose, I weighed about 97lbs. I had been on the lower dose but it stopped working, so... as much as the side effects concern me, the benefits so far outweigh the risks, for me. My GI said we would do the higer dose of remi for a few infusions, then try to go down to the lower dose. I'm in no rush to lower the dose though- I've had 2 high-dose infusions so far, with the next one scheduled for 1/21/08. I still can't seem to get off pred though, every time I go down to 5mgs, bleeding starts. We're trying to taper again. The nurses in my infusion center are fine- I get it in a vein on the top of my forearm, they never have any trouble finding it, & I don't really experience any pain from it at all.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 5mgs/day
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/8/2008 11:21 AM (GMT -7)   
Wow, some of you are on huge doses. When I posted this, I was wondering if the high dose had been causing my new extreme joint pain and bladder pain. I asked my GI if I could take a lower dose the next treatment, he told me no, to give the full dose a try, but that I may be developing antibodies against it. And I was like "well if I might have antibodies against it, then should I risk taking a high dose, I am scared" and he said nah, you might have a slight reaction and then we'll know you can't take it anymore, no biggie. YEAH RIGHT. That night after the infusion, I had the WORST leg cramps of my life till mid day the next day, and then sporadically through the next 2 weeks. Then, about 7 days after the infusion, I had the worst extreme joint and body pain to the point where I couldn't use my hands or move at all for 2 days... GI says it was not caused by the Remicade, that no one has reactions after 48 hours. I am really getting frustrated with my GI at this point and would like to strangle him. I just finished tapering Prednisone and have slight joint pain at the moment. UCinNC, my GI does not want me to take 6mp or Imuran, he said they won't work or take too long and my ulcer is too deep to wait.... Next is Humira. I am never going near that Remicade again. It's too bad, because it was working pretty well for a while. To those of you on Remicade, please keep a look out for weird side effects like pelvic/bladder pain, or new joint pain. I wouldn't wish what I've been through on my worst enemy.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Tapering Prednisone again :( for joint pain, Glucosamine 500 mgs, Vitamin B


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/8/2008 2:37 PM (GMT -7)   
princess - have you though about a second opinion? I mean, I am not a remicade user, and I certainly didn't see the results of your scope, but I think it sounds like this GI has some very specific opinions that may not be corroborated by another doctor. even more importantly, it sounds like you're frustrated and not being listened to by your GI, so maybe just getting the opinion of another GI would help you?
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/8/2008 3:10 PM (GMT -7)   
When I emailed my doc, he said that there is a new med out there which is infused called Abatacept which would be used instead of Remicade. Maybe try asking your doc about that? I didn't research it much as the Remi is working well for me.

Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/8/2008 4:32 PM (GMT -7)   
I think Abatacept is in clinical trials. Someone here was participating in one of the trials, but I don't recall who it was.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/8/2008 4:36 PM (GMT -7)   
I think you are right Judilyn; I believe it was Paul L., but I couldn't find the post for it. I'll keep looking!

Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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